What experiences do we share, and what barriers confront us? Is it possible to replace our contemporary, medicalized culture with something more representative of us as complete beings? Are we ready for a real sense of community yet?
I think so.

March 30, 2018

The name of the institution where disabled Japanese were murdered by Satoshi Uematsu

with a knife is shown in this image.

SUDEP is the unexpected death by epilepsy. We are coming to terms with this reality as epileptics. An aspect of having epilepsy is guilt and fear.

The guilt of causing a disturbance to the flow of everyday living and the fear that the people around us will simply give up on us. That their support for us and for our lives will evaporate one day. In the United States, it has been estimated that about once a week, a disabled person is murdered by someone close to them.

“Filicide” is the legal term for a parent murdering their child. In the disability community, “filicide” is used when talking about a parent or other relative murdering a child or adult relative with a disability. The murders of people with disabilities covered in the media, often show empathy for the murderer instead of the victim.

Approximately once a week, a person with a disability is murdered by a family member or caregiver. When these murders are covered in the news, they are often called “mercy killings”. This perpetuates the stigma and myth that the life of a person with a disability is not worth living and that it is a kind deed to end such a life.

When parents do kill disabled folks, adults or children, the media almost always presents one of two narratives: the harried-but-saintly parent or caregiver who couldn’t bear the terrible burden and (understandably) snapped one day, or the saintly parent/caregiver who killed out of the tenderest of mercies.

The Rudman Foundation offers a profile of filicide, with a link to the white paper it came from:

*At least 219 disabled people were killed by parents and caregivers between 2011-2015—an average of approximately a murder a week. This is a very conservative number due to under-reporting and the fact that a victim’s disability is not always made public. The real numbers are likely much higher.

*The killers routinely claim “hardship” as a justification for their acts. The media rarely questions such claims or asks for comment from disability rights organizations, and especially not from people with disabilities themselves.

*In the drive to explain a killing, the lives of the victims get erased resulting in killer-centered, rather than victim-centered reporting.

*Spreading the hardship narrative may lead to more violence, rather than changing policy around supports. In many cases, the narrative is fundamentally not true.

*Many killers receive little to no prison time. In such cases, perceptions of disability as suffering inform judicial decisions not to punish filicide

While this little post is not necessarily specific to those of us with epilepsy, we are a part of the numbers of disabled in this group. There is a National Day of Mourning dedicated to these victims of filicide; the date is March 1, each year.

March 17, 2018

THE INTERNATIONAL image of St Patrick’s Day is more about leprechauns, green beer and cabbage and corn beef than early Irish Christianity. And while the myths associated with St Patrick do not have a particularly medical flavour, in general saints have been linked with diseases and cures through the centuries.

St Patrick has been mentioned as someone to pray to if you have epilepsy.

Tradition has it that a person with epilepsy who slept on “leaba Pharaic” on Caher Island off the Mayo coast could be cured.